Scago-Blog

Black History Month and Sickle Cell Disease

In the spirit of Black History Month, let’s set aside an epoch of reflection and engage in the celebration of Black heritage and the achievements in sickle cell disease. The month of February serves to honor the rich tapestry of Black history and culture and provides an opportunity to spotlight the health disparities and challenges experienced by the Black community, particularly those related to sickle cell disease (SCD). Sickle cell disease is more than a medical condition; it's a thread woven in the fabric of Black history, symbolizing a journey of resilience, struggle, and the ongoing fight for equitable healthcare. Our organization, the Sickle Cell Awareness Group of Ontario (SCAGO), stands at the forefront of this battle, advocating for enhanced care, education, and support for those affected. As we engage in events and discussions celebrating Black History Month, let's integrate the narrative of sickle cell disease, highlighting the importance of early diagnosis, innovative treatments, and the critical role of vaccines in preventing life-threatening complications associated with this disease. The year 2023 witnessed the approval of two innovative cures for sickle cell disease- Casgevy in the UK, USA, and Bahrain; and Lyfgenia in the USA. This advancement will forever change the face of the disease and its impact on the lives of those affected. Our focus should also be on recognizing the pioneers who have made significant strides in sickle cell disease research and treatment in the Americas, many of whom come from our communities, such as Dr. Roland B. Scott, Charles F. Whitten, and Dr. Clarice Reid. In addition to these notable figures, we must celebrate Canadian heroes who have been instrumental in advancing the cause of SCD within our national context. Hon. Jean Augustine, a trailblazer in Canadian politics, was the first person to introduce sickle cell disease to the House of Commons, bringing much-needed attention and legislative focus to this condition. Her efforts laid the groundwork for subsequent advocacy and policy development in Canada. Senator Jane Cordy has also made a significant impact by introducing the first SCD bill passed in the Canadian Senate, marking a historic milestone in our collective effort to combat sickle cell disease. Senator Cordy's dedication to healthcare advocacy and her pioneering work in sickle cell legislation has been pivotal in promoting awareness and supporting the community affected by SCD. This month, let's renew our commitment to breaking down barriers in healthcare, promoting SCD research, and ensuring that the voices of those living with SCD are heard and honored. By doing so, we pay tribute to our heritage and take a significant step towards a future where every individual with SCD has access to the care and support they deserve. In solidarity and with heartfelt dedication to our cause, Mrs. Lanre Tunji-Ajayi, M.S.M President/CEO, Sickle Cell Awareness Group of Ontario
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Taking Charge and Raising Awareness: Sickle Cell Disease in Teens

Taking Charge and Raising Awareness: Sickle Cell Disease in Teens Millions of people throughout the world are afflicted with the hereditary illness known as sickle cell disease (SCD). Despite its widespread prevalence, there is still a very low level of knowledge about it, especially among teens. Understanding Sickle Cell Disease Sickle cell disease is an inherited condition that alters the shape and functionality of red blood cells that affects more than 20 million individuals worldwide. Instead of being round and flexible, the red blood cells of individuals with SCD are shaped like crescent moons or sickles. This irregular shape makes it difficult for these cells to navigate through small blood vessels, leading to episodes of pain and damage to vital organs. Teens often face unique challenges as they navigate the transition from childhood to adulthood. They grapple not only with the typical issues of adolescence but also with the physical and emotional toll of managing a chronic illness. The Importance of Awareness Increasing awareness of Sickle Cell Disease is important to enhance the well-being of individuals impacted by this condition. Empowering teens with knowledge, including its origins, inheritance patterns, and physiological effects, equips them with the tools to take better control of their health. Informed individuals are better prepared to manage the challenges associated with SCD effectively. Taking Charge of SCD For teens living with sickle cell, taking charge of their health is fundamental. By embracing this responsibility, they can enhance their overall happiness and fulfillment. Education: Understanding the underlying causes and symptoms, helps young adults to be more proactive in recognizing any warning signs or triggers. Engaging in open discussions with their healthcare team allows them to actively participate in creating a personalized treatment plan that suits their personal needs and goals. Preparation: Teenagers should be well-prepared for emergencies, knowing when to seek immediate medical attention and how to manage pain or other symptoms during such situations. Developing a crisis plan with their caregivers can provide them with a sense of security and confidence in handling unexpected challenges. Exercise: Engaging in regular exercise helps improve cardiovascular health, strengthens muscles, and enhances overall well-being. Participating in appropriate physical activities also promotes a positive mindset and helps teens build resilience to face the challenges that come with the condition. Tip: Always speak with your healthcare professionals and know your limits. Nutrition: Proper nutrition and hydration are important components of managing SCD. A balanced diet rich in nutrients helps support overall health and can reduce the risk of complications. Staying well-hydrated helps to prevent the occurrence of painful vaso-occlusive crises and maintains adequate blood flow throughout the body. Building Supportive Communities Building supportive communities is essential for teens living with Sickle Cell Disease to thrive and lead fulfilling lives. Schools play a role in helping these teenagers. The special requirements and difficulties individuals with the condition meet need to be communicated to teachers and staff. This knowledge enables them to provide appropriate accommodations, such as allowing extra breaks, providing additional time for assignments or exams during times of crisis, or making provisions for missed school days due to medical appointments. Family members can be strong pillars of understanding, empathy, and love, helping navigate the complexities of the disease. Offering emotional reassurance during challenging times and celebrating successes, no matter how small, can positively impact overall wellbeing. Families can also work together to create a healthy and nurturing home environment, which includes supporting them in following their treatment regimen and efficiently maintaining their health. Community organizations devoted to supporting individuals affected by SCD play a pivotal role in building a network of resources and advocacy. They may create support groups or events that bring together teens, allowing them to connect with others who understand their experiences and challenges. Such connections can reduce feelings of isolation and provide a sense of belonging to a wider community. How teens can raise awareness Teens with SCD can play an active role in raising awareness about their condition to promote understanding, empathy, and support within their communities. Here are some examples of how they can do so:
  1. Share Their Story: Teenagers can share their personal experiences by written narratives, videos, or public speaking. By sharing their journey, challenges, and triumphs, they can help others understand the realities of living with the condition and break down misconceptions.
  2. Engage in School Presentations: With the support of their school and teachers, teens can give presentations about SCD to their peers. This helps create awareness, fostering a more supportive and understanding school environment.
  3. Participate in Awareness Events: Actively participating in local and national events related to sickle cell disease helps draw attention to the condition and its impact on individuals and families.
  4. Use Social Media: These platforms offer a powerful tool for advocacy and awareness. Youth can share information, stories, and resources on their social media accounts to reach a broader audience and engage with others who may be affected by the condition worldwide.
  5. Create Educational Materials: Teenagers can work with companies and groups to develop SCD education materials that are appropriate for their peers' age range. Schools, community centers, and medical facilities may disseminate these items.
  6. Start Support Groups: Teens can initiate support groups for individuals with SCD in their community. These groups can offer a safe space for sharing experiences, providing mutual support, and raising awareness collectively.
  7. Partner with Local Organisations: Connecting with local support organizations or patient advocacy groups can offer teens valuable guidance and resources for their awareness initiatives.
  8. Speak with Local Media: Teens can reach out to local newspapers, radio stations, or TV channels to share their experiences and educate the public. Media coverage can help reach a broader audience and generate more awareness.
Conclusion Raising awareness about sickle cell disease and empowering teens can transform lives. By working together, we can create a more inclusive and supportive society.    
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Sickle Cell Summit 2022

Sickle Cell Disease is the most common genetically inherited disease in Canada. It is a severe, congenital disorder of the red blood cells, affecting individuals from diverse ethnic backgrounds – Mediterranean, African, Caribbean, Middle East, South America, and South Asia. More than 6000 Canadians and 3500 Ontarians are affected, and that number is increasing annually in large part due to migration from countries with high disease prevalence, as well as a natural increase within Canada from parents who carry sickle cell disease genetic traits.

Sickle Cell Disease can be a debilitating illness and people suffering from Sickle Cell Disease often experience negative health outcomes- compared to people who do not live with SCD. This is further exacerbated by structural and systemic inequalities in our healthcare system. For example, individuals with the disease presenting in Canadian hospitals with vaso-occlusive crisis (painful episode representing the hallmark of the disease) are sometimes treated as drug seekers. This is especially true of ethnic minorities.

September is Sickle Cell Awareness Month and the Sickle Cell Group of Ontario (SCAGO) is dedicated to bringing awareness to the lived experiences of people who live with Sickle Cell Disease and the attendant health inequities. SCAGO is committed to addressing the factors that contribute to negative health outcomes for people living with Sickle Cell Disease. As part of our mandate to provide recent, accurate information and education, SCAGO will be hosting its 2nd annual Sickle Cell Summit on November 4th and 5th, 2022.

This year’s Summit will bring together SCD stakeholders (in Canada and globally) from various sectors, including clinicians, scientists, patients, and their families, health policymakers, government officials, and advocacy groups to discuss challenges and successes in ensuring equitable care and treatment in SCD similar to other diseases.

The summit is an opportunity for patients, caregivers, healthcare providers, and industry stakeholders to convene, discuss and chart the way forward on our journey to find a sustainable, effective treatment for Sickle Cell Disease.

References 
  1. Kim, E., Graves, E., Tunji-Ajayi, L. & Pendergrast, J. (2018). How Many Sickle Cell Disease Patients Are There in Ontario? Results of a Query of Health Services Administrative Databases. Retrieved from: https://sicklecellanemia.ca/how-many-sickle-cell-disease-patients-are-there-in-ontario
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Addressing the Health Equity Gap in Sickle Cell Disease in Ontario

Health equity is about providing people with an equal chance of attaining their fullest health potential, including addressing the social determinants of health such as racism and poverty1.

Sickle Cell Disease is the most common genetically inherited disease in Canada. It is a severe, congenital disorder of the red blood cells, affecting individuals from diverse ethnic backgrounds – Mediterranean, African, Caribbean, Middle East, South America, and South Asia. More than 6000 Canadians and 3500 Ontarians2 are affected, and that number is increasing annually in large part due to migration from countries with high disease prevalence, as well as natural increase within Canada from parents who carry sickle cell disease genetic traits. 

Individuals living with sickle cell disease experience chronic fatigue and episodic pain crises. Without proper, ongoing care, these individuals experience major health complications including organ failure, even at a young age. They also have compromised immune systems and are highly susceptible to infection. As such, they are at a higher risk of contracting dangerous communicable illnesses, such as COVID-19, and experiencing poorer outcomes compared to their peers who do not have sickle cell disease. 

In Ontario and across the country, sickle cell disease predominantly affects individuals who identify as Black. The persistent health disparities experienced by racialized communities creates significant barriers to health equity for Ontario’s Black community, particularly those individuals with sickle cell disease who depend substantially on access to Ontario’s health and social services.

Improving health outcomes for Ontario residents living with sickle cell disease will not only benefit the patients and their families by decreasing severe disease complications, and the need for hospitalization, but it will also improve their quality of life. It will increase their opportunities to contribute productively to society, while significantly decreasing the burden of costly in-patient care. 

Current Status of Sickle Cell Disease in Ontario

Ontarians with sickle cell disease continue to die from largely preventable complications of sickle cell disease. Under the circumstances, it is especially troubling to know that you, your child or family member with sickle cell disease may:

  • Be stigmatized in Emergency Departments, frequently labeled as “drug-seeking”, delayed and/or denied access to effective pain medications when presenting for medical treatment for pain crises;
  • Have a life expectancy that is significantly reduced by about 25 to 30 years compared to other Ontarians without sickle cell disease;
  • Have children born with sickle cell disease genetic traits, and not be aware that they too are at risk of having affected children of their own;
  • Depending on the hospital of admission across the province, receive sub-optimal care and treatment resulting in preventable complications and possibly premature death; 
  • Not have access to comprehensive care, including lifesaving treatments, drugs and knowledgeable care providers; and
  • Often have quality of life that is lower than other Ontarians without sickle cell disease.

Management of Sickle Cell Disease in Ontario Hospitals

Mismanagement of sickle cell disease does not only impact the individuals and their families, but the healthcare system as a whole. 

Multiple studies have shown that patients with sickle cell disease rely heavily on acute care medical services such as emergency room visits and inpatient hospitalization3-11. Inpatient hospitalizations are particularly expensive. 

According to Mrs. Lanre Tunji-Ajayi, the president/CEO of the Sickle Cell Awareness Group of Ontario, one week of acute care (non-ICU) admission of an individual with sickle cell disease in an Ontario hospital costs the provincial government an average of $20,000 and many individuals with sickle cell disease are admitted at an average of 6-12 times annually. 

The length of hospitalization may range from one to several weeks of admission/year. Using conservative figures, non-ICU admission 6 times/year, lasting one week per admission, may cost upwards of $120,000 per patient/year and upwards of $9 million for a patient’s lifetime; and this figure excludes the societal costs of unemployment and decreased work productivity. As the number of patients with sickle cell disease in Ontario continues to grow, the associated burden on the medical system is becoming considerable.

However, the good news is that there is an enormous opportunity to decrease the health care costs of patients with sickle cell disease while simultaneously improving clinical outcomes. Shifting the care of patients with sickle cell disease from an inpatient to outpatient setting, primarily through the provision of basic preventative health maintenance and the use of hydroxyurea, can reduce total healthcare costs by 20%.12

Bridging the Health Equity Gap for Sickle Cell Disease in Ontario

Given the provincial government’s responsibility in ensuring equitable access to health by all of its citizens, we implore the Ministry of Health and the newly created Ontario Health to work with the Sickle Cell Awareness Group of Ontario (SCAGO) in ensuring that, (similar to Hemophilia Ontario), individuals with sickle cell disease receive appropriate and timely intervention that:

  • reduces preventable complications, stigma and discrimination in Ontario hospitals
  • improves their physical and mental well-being.

References

  1. Health Equity and the Social Determinants of Health: A Role for the Medical Profession, Canadian Medical Association, 2013, policybase.cma.ca/en/viewer?file=%2Fdocuments%2FPolicyPDF%2FPD13-03.pdf#search=&phrase=false. 
  2. Kim, E., Graves, E., Tunji-Ajayi, L. & Pendergrast, J. (2018). How Many Sickle Cell Disease Patients Are There in Ontario? Results of a Query of Health Services Administrative Databases. Retrieved from: https://sicklecellanemia.ca/how-many-sickle-cell-disease-patients-are-there-in-ontario
  3. Yusuf HR, Atrash HK, Grosse SD, Parker CS, Grant AM. Emergency department visits made by patients with sickle cell disease: a descriptive study, 1999-2007. Am J Prev Med. 2010; 38:S536–541
  1. Mvundura M, Amendah D, Kavanagh PL, Sprinz PG, Grosse SD. Health care utilization and expenditures for privately and publicly insured children with sickle cell disease in the United States. Pediatr Blood Cancer. 2009; 53:642–646
  1. Amendah DD, Mvundura M, Kavanagh PL, Sprinz PG, Grosse SD. Sickle cell disease-related pediatric medical expenditures in the U.S. Am J Prev Med. 2010; 38:S550–556
  1. Raphael JL, Mei M, Mueller BU, Giordano T. High resource hospitalizations among children with vaso-occlusive crises in sickle cell disease. Pediatr Blood Cancer. 2012; 58:584–590
  2. Raphael JL, Dietrich CL, Whitmire D, Mahoney DH, Mueller BU, Giardino AP. Healthcare utilization and expenditures for low-income children with sickle cell disease. Pediatr Blood Cancer. 2009; 52:263–267
  1. Wolfson JA, Schrager SM, Coates TD, Kipke MD. Sickle-cell disease in California: a population-based description of emergency department utilization. Pediatr Blood Cancer. 2011; 56:413–419.
  2. Frei-Jones MJ, Baxter AL, Rogers ZR, Buchanan GR. Vaso-occlusive episodes in older children with sickle cell disease: emergency department management and pain assessment. J Pediatr. 2008; 152:281–285
  1. Bundy DG, Strouse JJ, Casella JF, Miller MR. Burden of Influenza-Related Hospitalizations Among Children with Sickle Cell Disease. Pediatrics. 2010; 125:234–24
  1. Brousseau DC, Owens PL, Mosso AL, Panepinto JA, Steiner CA. Acute care utilization and rehospitalizations for sickle cell disease. JAMA. 2010; 303:1288–1294
  1. Boulet SL, Yanni EA, Creary MS, Olney RS. Health status and healthcare use in a national sample of children with sickle cell disease. Am J Prev Med. 2010; 38:S528–535
  1. Wang WC, Oyeku SO, Luo Z, Boulet SL, Miller ST, Casella JF, Fish B, Thompson BW, Grosse SD; BABY HUG Investigators. “Hydroxyurea is associated with lower costs of care of young children with sickle cell anemia.” Pediatrics. 2013;132:677-83
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Black Health Matters

June 12, 2020- Toronto, Ontario: These last few weeks have become increasingly challenging as we saw social injustice with the tragic killing of George Floyd, Briana Taylor, and so many others; sparking global unrest and demonstrations. The unnecessary deaths triggered discussions on how much, or how little, has changed when it comes to racism, and the demonstrations that started in Minneapolis where George Floyd died in police custody have spread all over the world, and even to our own country, Canada.

The killings only demonstrate the inequalities faced by the racialized communities – especially Black communities – in every area of life, including inadequate access to health care, food, housing, and jobs, and of course the unfair target by the police bullet.

It is our duty as a community to come together to take steps towards reforming and advocating for equality in access to healthcare and to also ensure that no one should be discriminated against based on the color of their skin, ancestry background, sexual orientation, health challenges, and where they live.

According to PM Trudeau in a statement issued on June 2nd, Canadians must be aware of the challenges facing Black Canadians and other minorities and take steps to address them. There is systemic discrimination in Canada, which means our systems treat Canadians of color, Canadians who are racialized differently than they do others.

In sickle cell disease, systemic racism has always been very real as individuals with the disease presenting in Canadian hospitals with vaso-occlusive crisis (painful episode representing the hallmark of the disease) are treated as drug seekers compared to their non-racialized counterparts presenting with pain.

This led SCAGO in 2019 to write Dr. Rueben Devlin who leads the Ontario Premier’s council on improving health and ending hallway medicine that systemic racism is not only costing the system unnecessary health care dollars, it is costing many their lives and it is no longer acceptable! Currently, a working group comprising of representatives from different racialized communities is working on the next steps on this important health advocacy initiative. Racial injustice in health care is unhealthy and must be stopped!

In healthy individuals, red blood cells are round and flexible and move freely through blood vessels to distribute oxygen to all parts of the body. Individuals with SCD have red blood cells which are “sickle” in shape (C-shaped), sticky, and inflexible. These structurally modified red blood cells have difficulty moving through the blood vessels and instead adhere to vessel walls, causing clots within the vessels, inflammation and limiting oxygen distribution to critical organs. Persons with SCD often experience significant pain, and other complications such as infections, strokes, and acute chest syndrome.

About the Sickle Cell Awareness Group of Ontario (SCAGO)
Since 2005, SCAGO has been creating and providing evidence-based supports and services to enhance the health and the quality of life of families with SCD. Its broader vision is for every Ontarian with SCD to have equitable access to comprehensive, standard care regardless of the place of residence in the province.

Twitter: @SCAGO1; Instagram: @SCAGO.1 Website: www.sicklecellanemia.ca
Visit our website to learn more about sickle cell disease.

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